What is the shape of disability activism?
There is a lot of natural variation in the large and diverse disabled population, and many different opinions among the smaller core of committed disability activists. But there are some beliefs, positions, and mindsets that shape the community of individuals and organizations loosely referred to as “Disability Activism.” They aren’t exactly boundaries or litmus tests. They are more like magnets that draw disability advocates in certain directions. What are these key positions? How do we identify them?
Here are five questions that go a long way towards defining disability activism as more than a set of moods and activities, but rather a movement with both diversity and a distinct direction.
1. Is disability mainly a medical or a social experience?
The disability experience has two main aspects. First, there are people’s own mental and physical conditions, practical impairments, pain, discomfort, illness, and lack or loss of functioning. These form the conventional components of disability itself. It is essentially a person experience, and medically based.
Then there are the barriers people encounter that are related to their disabilities, but come from the outside. This can include lack of physical, sensory, or mental access to essential spaces, processes, goods, and services – and discrimination by individuals, laws, institutions, and practices. These are the social forces that make disability so much more than a purely personal and medical experience.
These two aspects of disability have for some time been referred to as the “Medical” and “Social” models of disability. Most disabled people experience elements of both. But whichever comes to be your dominant concern is both affected by and then further shapes how much you look to yourself for a better life and how much you look to outside people and social forces.
Modern disability activism is mostly based in the Social Model of disability. It is more concerned with collective action to make society more accepting, equitable, and accessible, and focused much less on funding for medical research or development of new treatments and therapies. This less a matter of right or wrong, than it is a difference in focus. But it’s enough of a difference to give disability activism a noticeably different tone, flavor, and direction than, say, fundraising for medical research, or treatment of disabling conditions. Broadly speaking, disability activism seeks to fix society’s ableism, not fix disabled people’s disabilities. That gives disability activism it’s most essential and distinct shape and dimension.
2. Should “disability” itself be defined narrowly or broadly?
30 years ago or more, the “disability community” was mostly understood to be people in wheelchairs, plus blind people, Deaf people, and people with intellectual and developmental disabilities. Now more than before, we include mental illness, learning disabilities, chronic illnesses, and chronic pain as disabilities. In 1990, the ADA’s definition of qualifying disability helped solidify this trend which continues to this day.
Most people with any experience at all in disability culture acknowledge that this more expansive definition of “disability” is right and proper. But the truth of it still isn’t fully established, even within the disability advocacy community itself. There is still an implied hierarchy in which people with physical disabilities dominate, and those with other disabilities, especially those with mental illness or intellectual disabilities, are still too often treated as secondary partners. And outside disability culture, people still tend to associate the word “disabled” first with wheelchairs, crutches, and prosthetics, and maybe hearing aids and guide dogs – with other disability groups treated as adjunct or distinct groups with different sets of concerns and standards of treatment.
The trend though is firmly on emphasizing a broad definition of disability, especially in disability activism. Legal equality, physical freedom, personal choice, equal opportunity, and social respect and inclusion aren’t just concerns for wheelchair users. They concern all people with any physical or mental impairment. While people experience vastly different conditions, they share more than enough in common for them to all fall under the definition of “disabled.” This gives disability activism a great deal more diversity and scope than it once had.
3. Is it disabled people’s responsibility to adapt to society, or society’s responsibility to accommodate disabled people.
Disability rights laws like the Americans with Disabilities Act and accessible building standards are based on the idea that we all have a civic duty to create a more accessible and equitable setting for disabled people. But popular ideas about disability are more mixed.
There is still always a rumble of counter-argument asserting that society’s duties to disabled people should be limited, and that the most praiseworthy disabled people are those who “help themselves.” While disability activists for accessibility and accommodation are often admired at first, that initial goodwill tends to burn away fast, exposing an underlying impatience with disability activists’ “unreasonable demands.” Meanwhile, popular culture celebrates notable disabled “achievers” even more lavishly.
Everyone acknowledges that we all bear personal responsibility for our own lives, including those of us with disabilities. Disability activism isn’t about evading responsibility and blaming others for all misfortune. At the same time, there is little tolerance left in disability activism for arguments about “limitations” and “undue hardship” as reasons for ongoing discrimination and failures of accessibility. Being “realistic” about a barrier-free society, and deliberately crafting more “limited” goals makes less and less sense as laws like the ADA turn 30 years old, and the Rehabilitation Act gets close to 50.
So, there is a definite belief in disability activism that demanding more from government and society is right and justified. The movement values diplomacy and realism. But it’s not afraid to claim more space in public attention and priorities.
4. Do some people have disabilities so “severe” that disability rights principles don’t apply to them?
Some people naturally seem to divide the disability population into two segments. One group is made up of self-directing people who may need help and accommodated here and there, but can essentially be treated as ordinary, functioning people. The other group consists of people whose disabilities are regarded so significant or “profound” that they are like very young children, who should be cherished and cared for, but regardless of age can never be treated as whole adults and free human beings.
This idea that there are really two different disability communities divides disabled people and their allies on numerous issues, including long term care and institutionalization, the right to life saving medical treatment, the pros and cons of legal guardianship, sub-minimum wage and sheltered workshops, and parents sharing intimate details of their disabled loved ones’ lives without their consent. All of these issues involve debates over practices that most people would never tolerate for themselves, such as physical segregation and confinement, loss of legal status, denial of privacy, substandard pay for labor, and even the right to live. Yet there are still people within and adjacent to disability activism who accept and defend different standards of basic rights for some disabled people.
By and large, however, disability activists believe that all disabled people are capable of exercising personal agency and choice in their lives, and have a right to the same standards of dignity, privacy, and consent that most people take for granted. Some can exercise their rights independently, with or without a little simple help. Others need more intensive or extensive support. But even those who have the most disability-related difficulty weighing options, making decisions, and communicating them accurately should be assisted to exercise maximum personal freedom. Needing help shouldn’t mean giving up your rights. Disability activists may differ over some specifics, but disability rights really are for everyone. This is close to an essential, defining belief of disability activism. And it strongly informs views on one other core question of disability activism …
5. Is congregate care and control always necessary for some disabled people?
Even among people who are concerned about the problems of abuse and neglect in nursing homes, assisted living facilities, group homes, and other “congregate care,” there are some who think institutional care is essential and must be improved. Others envision and strive for a future without care “facilities” at all. In disability activism there is an uneasy balance between two approaches. Do we try to make these fundamentally confining and flawed care systems a little safer and nicer, so fewer people suffer and die unnecessarily? Or do we push for stronger efforts to transition away from congregate care facilities, or abolish them altogether, in favor of a much bigger investment in more individualized home care services, so disabled people can not only be safe and healthy, but free and integrated into their communities?
This dilemma partially reflects the typical reform vs. revolution conflict found in all advocacy movements. But it also links back to the question of whether all people with any disability can be self-directing and in some sense “free,” or whether some are simply “too disabled” and require more closely supervised and sheltered care.
The broad consensus in disability activism is that public policy relies far too much on institutional care in “facilities,” and puts far too little money and commitment into home-based personal care and other individualized services. Whether or not we can ever phase out or abolish care facilities entirely, there is basic agreement that we rely on them too much, and that much better alternatives are far under-used.
These and other questions don’t draw strict boundaries, or present orthodoxies that must never be violated. They aren’t membership tests for disability activism. But they are indicators of what disability activism is and isn’t, and markers of the ideas that influence the disability rights movement’s shape and direction. For new activists especially, questions like these can help clarify where we stand, and how conventional views on disability are changing.
I am a freelance writer with lifelong disabilities and 22 years experience as a service provider and executive in nonprofit disability services and advocacy. I write